Linked Data

Women's Health Australia (also known as the Australian Longitudinal Study on Women's Health) has access to a number of State, Territory, and National datasets. State-based datasets linked to survey participants include Admitted Patients and Perinatal collections. National linkages include MBS, PBS, Aged Care, and Cancer collections. For details of current holdings, please see the List of Linked Datasets (below).

How to Access Linked Data

The linked datasets are not as freely available as the Women's Health Australia data. There are strict guidelines for their use. Permission to use the data must be obtained from the Data Access Committee and the Data Linkage Committee (DLC) of Women's Health Australia. Anyone on the project that will have access to the raw datasets will need to obtain approval from the data custodian of the requested dataset and, in some cases, an ethics committee. When external approval is needed, Women's Health Australia will endeavour to gain approval on behalf of the requested investigator. In this instance, a fee may be charged.

Each prospective data user is required to specify and justify which records and fields are required. Follow the links above to see a listing of available variables.

Analyses on external linked datasets may only be conducted at the University of Queensland, the University of Newcastle or through the SURE facility at the Sax Institute. If external researchers wish to include external linked data in analyses, they may opt for one of the following:

The researcher may conduct analyses on site at either the School of Public Health, University of Queensland or the Research Centre for Generational Health and Ageing, University of Newcastle. This option is dependent on the availability of facilities and resources at the time of request.

Women's Health Australia will provide an experienced statistician to conduct analyses on behalf of the researcher. This option will involve a cost recovery that will be negotiated on a case by case basis, based on the complexity of work involved. It is also dependent on the availability of resources.

Researchers may opt to use the SURE facility. If this option is chosen, researchers are responsible for any costs imposed by SURE to access the data.

Please note that only one external (non-ALSWH) collaborator should be nominated to access linked data, per EoI (unless a student will be undertaking the analysis, in which case, the supervisor should also be nominated).

Before making your submission, please familiarise yourself with the content of the linked datasets currently held by ALSWH (see List of Linked Datasets, below).

Requirements for Publishing Linked Data

1. Pre-publication review requirements

For some linked data collections, Data Custodian preview of any proposed publication (including manuscripts, reports, presentations, and posters) is a condition of ALSWH’s Data Use Agreements. This requirement applies to:

APPLIES to Department of Veterans Affairs (DVA) sourced MBS and/or aged care service data, ONLY if you intend to publish analyses which distinguish DVA clients and/or services. Note that any such analyses should be detailed on your EoI, and you should already have an internal DVA sponsor for your project, as per the Departments of Defence and Veterans' Affairs HREC Researcher and Administrative Guidelines (Section 1.67 to 1.73). Where researchers include DVA health records (MBS or Aged Care) in their analyses simply to ensure complete coverage of the cohort, they do not need pre-publication review.

Note: To avoid confusion, before forwarding draft manuscripts to data custodians, first ensure that the paper actually refers to data from that custodian. While you may have accessed and analysed linked datasets for your project, not all data is necessarily included for publication. Notification and review by the custodian is only required where results specifically include data from their collection, or the dataset has otherwise been mentioned in the paper.

It is the author’s responsibility to submit the manuscript to the Data Custodians. To assist you in this process, we will provide you with an email template and the current Custodian email addresses; please notify Colleen Loos of the datasets used in your manuscript and your EoI number.

2. Acknowledgement requirementsWhere data from external sources are used, the following acknowledgements should be included:Medicare Benefits Schedule (MBS) or Pharmaceutical Benefits Scheme (PBS) data: “The authors acknowledge the Department of Health and Medicare Australia for providing MBS and PBS data, and the Australian Institute of Health and Welfare (AIHW) as the integrating authority”. WhereRepatriation-MBS (R-MBS) data from DVA were also used, this statement should be used instead: “The authors acknowledge the Departments of Health, Veterans’ Affairs, and Medicare Australia for providing MBS and PBS data, and the Australian Institute of Health and Welfare (AIHW) as the integrating authority”. PLEASE NOTE that if you intend to publish analyses which distinguish DVA clients and/or services, further conditions will apply. Please contact Colleen Loos, or refer to Departments of Defence and Veterans' Affairs HREC Researcher and Administrative Guidelines (Section 1.67 to 1.73).

*Centre for Victorian Data Linkage, Department of Health and Human Services Victoria, [for the Victorian Admitted Episodes Dataset] [and the Consultative Council on Obstetric and Paediatric Mortality and Morbidity, for the Victorian Perinatal Data Collection]”*If you have used any of these collections, the following statement must be added: “This project is supported by the Population Health Research Network which is a capability of the Australian Government National Collaborative Research Infrastructure Strategy and Education Investment Fund Super Science Initiative.”

Cause of Death (NDI) Data: “The authors acknowledge the assistance of the Data Linkage Unit at the Australian Institute of Health and Welfare (AIHW) for undertaking the data linkage to the National Death Index (NDI)”.